In Memoriam: Lisa Boncheck Adams
“…I search for powers to rise above, get out, fly away…
The words of disease
become words my brain gravitates to.
The ebb and flow of cancer,
Of life.
And so too,
Inevitably,
Of death….” –Lisa Boncheck Adams
Yesterday a woman of great courage died. Lisa Boncheck Adams chronicled her experiences of metastatic breast cancer in prose and poetry . Diagnosed Stage II breast cancer in 2006, she cleared the 5 year mark and was NED (No Evidence of Disease) for 6 years. She is part of the 30% of breast cancers, that despite being caught early and despite being a “5-year survivor” die of metastatic breast cancer.
Like many others, she advocated and brought her life out into the open to say that breast cancer death rates have not changed in since 1970. An enormous amount of donated money, including money from walks and runs, is wasted on out-of-date awareness campaigns.
Below is a post written around the October pink that angers so many people with breast cancer. Lisa participated on The Stream discussing these issues.
The Myth of Pink
Pinktober—I’d never heard this appellation before using twitter in October 2011. That’s when I joined a #BCSM (breast cancer social media) tweetchat and learned how many women with metastatic breast cancer feel about this month.
I’ll never think of October in the same way.
October is Breast Cancer Awareness Month and pink, and the pink ribbon started by the Komen Foundation, is everywhere. Yet there is only one day in October that is dedicated to remembering that breast cancer metastasizes and kills. That day is October 13th Metastatic Breast Cancer Day.
Interview on The Stream
In an October 11th interview on The Stream, Gayle Sulik, sociologist and author of Pink Ribbon Blues describes “pinktober” this way:
“What we have now is visibility for the sake of visibility…
When you see a pink building what does that… make you conscious of…with respect to breast cancer?
We’ve…lost sight and moved…into a brand… a breast cancer brand with a pink ribbon logo.”
In the same interview, Dr. Susan Love, renowned author, researcher and breast cancer surgeon agrees, “I think that when the NFL is wearing pink, we have…achieved awareness…the goal has to be beyond awareness…it has to be…to finding the cause and preventing [breast cancer] all together.”
Breast Cancer Bloggers
Breast cancer bloggers are overwhelmed with the onslaught of pink. Jackie Fox reposted her post on the landmine that is October and Lori Marx-Rubiner jumped in to tackle Breast Cancer Charities of America’s advertisement with “a nude Gretchen Christine.”
The Tellingknots blogger says, “Cancer isn’t cute. It is a mortal illness. It disfigures. It kills.” While Yvonne Watterson writes, “How jarring it is to contemplate disease and death juxtaposed with all the trappings of breast cancer awareness – ribbons and teddy bears and perfume bottles and cupcake liners. Such trinkets would not be out of place in a 19th century nursery rhyme about little girls, very far removed from the ravages of a disease that kills.”
Gayle Sulik explains in the interview on The Stream, “It is very good for companies… jumping on the pink ribbon bandwagon they are making a lot of money…many of the companies don’t donate, some do…The profit margin is significantly higher than the donation…they are benefiting more than the charities are benefiting.”
Here is an example of what Dr. Love and women in the breast cancer blogging community are talking about. Ann Silberman, author of the blog “But Doctor…I hate Pink, and now someone with metastatic breast cancer, received this email in October 2012:
“Pornhub.com needs your clicks to help Save the Boobs! October is finally here, and while some will be bundling them up for the colder weather, and others will be showing them off in the naughtiest of costumes come Halloween, one thing’s for certain, this month marks a time for saving them – that’s right, it’s National Breast Cancer Awareness month.
During October, Pornhub.com, the leading destination for online adult entertainment, will donate 1c for every 30 views of its ‘Small Tits’ and ‘Big Tits’ videos, meaning the more boobs that are viewed, the more money that will be showered upon the Susan G. Komen Foundation. And with the site attracting millions of clicks per month, the amount raised over the next 31 days will be considerable.
It doesn’t matter if you’re into itty-bitty-titties, the perfect handful, jumbo fun-bags or low-swinging flapjacks, what matters most is that your kind and selfless gesture will go a long way towards helping our sisters to find a cure.
This isn’t the first time Pornhub has taken action to combat breast cancer. Six months ago, the website brought their “Save the Boobs” bus to NYC to rescue Manhattan’s mammories by spreading awareness.
So how can you help save the boobs this time around, you bravely ask? Simply visit the landing page on Pornhub’s site (link available upon request) and follow the prompts, or head to the ‘categories’ tab on Pornhub.com’s home page and choose either “Small Tits” or “Big Tits” videos, then sit back and let the good times bounce. The Save the Boobs web page will keep track of the total unique visits for the month so be sure to encourage your red-blooded friends and family (yes, tell your fathers too) to become a hero of the headlamps and a champion of the cha-cha’s! While on the page you can also tweet the link to your social circles. Together we can give fundraising our breast shot”
Needless to say, Ann’s reaction was less than celebratory.
Quote from Lisa Adams
Lisa Adams, Huffington post blogger explains in The Stream interview, “Awareness should be about education… we need to teach accurate facts about breast cancer…you can have early detection of breast cancer and still have it metastasize and get metastatic breast cancer which is incurable and which is what I have. You can do everything right and cellular biology is more powerful than that.”
Many in the breast cancer blogging community believe that metastatic breast cancer needs to be the focus of the entire month of October, not just October 13th. MBC is what is killing family members. “I did everything I could and I achieved NED (no evidence of disease at 5 years) status but that doesn’t mean that the cells aren’t still there and that they can’t come back. There is this focus on the positive stories, the positive outcomes…there is this focus on surviving and putting cancer behind you and the truth of the matter is that in 30% of the cases women and men will have metastases even if they do everything right.” Lisa states. Lisa is the mother of 3 small children.
When people do not know that 90 percent of those with metastatic cancer die of the disease and 100% of the deaths due to breast cancer occur in those with metastatic disease, there is a problem, according to Dian Cornelliussen-James, co-founder of Metavivor.
Even with all the awareness and early detection, one third of the people diagnosed with breast cancer will die of it. Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.
“We must present the good and the bad…we don’t want to take away your hope…if 30% later have a metastases why aren’t 30% of the stories …presented in breast cancer awareness month by the media about women and men with metastatic disease?” Lisa asks.
“There is a lot of collateral damage from the treatment…we act as if you go through the treatment you’re fine, you go on with your life and yet we don’t talk about chemobrain, the numb toes, the pain and the swelling of the arm. “ Dr. Love explains.
Not Everybody Is Cured
Gayle Sulik describes October’s pink this way, Pinktober “tends to be celebratory…it’s wonderful, we have awareness, you’ve won your battle. But…it is much more complex than that…not everybody is cured…we lose that with the pink.”
I have a personal interest in more research dollars being moved from the easy awareness campaigns to the more difficult research on cell biology and metastases. To have my mother at my wedding as the matron of honor, we held the wedding at her bedside in the hospital. I am so grateful we did this because she died two weeks later of metastatic breast cancer.
Thanks, Kathleen, for reminding us to look far beyond the pink that saturates October. With tireless voices like yours within and outside this blogosphere, the message has to get out that metastatic breast cancer – the kind that killed Susan G. Komen – is the kind that needs serious attention. We can no longer trivialize and sexualize breast cancer with pink ribbons and endless races for a cure. What causes it, how do we prevent it, and what do we do to stop it from metastasizing and killing with impunity.
I am so sorry that you lost your mom to such a scourge. So wrong and so very unfair.
Thank you so much for your comment. Thank you for your kind words about my mother. I’m with you, we need real research and we need real awareness of what breast cancer. When 30% of those diagnosed with breast cancer move on to having metastatic disease, still, there is no reason to celebrate.
Kathleen this is a great look at combining what so many people in the breast cancer community feel about all of the pink hoopla and the fact that metastatic disease gets lost in the sea of pink. Metastatic breast cancer awareness should be more than one day in October and all month. I’m sorry about the death of your mother from metastatic breast cancer. I am glad that she could be at your wedding, but I am sure it was bittersweet to be at her hospital bedside for such a happy occasion.
Susan, thank you for your comment! I agree, October needs to be about every type of breast cancer including metastatic! Thank you for you sympathy…I’m forever grateful we moved the wedding date in time.
Kathleen, so sorry about your mom. The loss of a mother never really goes away. Thank you for sharing and reminding us all that each life snuffed out by cancer is a huge loss to their families, friends and communities.
You are so right Natrice. Thank you for commenting.
Great article Kathleen. And a beautiful yet heartbreaking story at the end. The complex emotions this month brings must be staggering for so many. I’m very sorry. I hope more can and will be done to stop the disease.
I hope that more people become aware of metastatic cancer. Thanks for commenting and for your sympathy. I hate that others lose mothers, daughters, fathers (men get breast cancer too) and friends to this terrible disease.
Hi Kathleen,
Thanks for this important post. Metastatic breast cancer should be the focus all month long. While early detection is certainly important, the entire spectrum of this disease needs to be discussed, and not just in October, but all year long. As I’ve said before, breast cancer awareness without mets awareness isn’t awareness at all. And I’m sorry your mother died from this wretched disease too. We will not forget.
I know you had a similar loss. We must not forget those with metastatic disease. #FearlessFriends
Thanks for this, Kathleen, and for the link to the heartbreaking story of your mother’s experience with metastatic breast cancer.
Such an important message, this retail pinkification of awareness-building – as if awareness is what’s needed. Consumers need to be reminded to “Think Before You Pink” – as the excellent website warns – and to read the fine print when purchasing anything even remotely pink this month and beyond. In the last couple of years, we’ve seen pink buckets of KFC, pink-handled Tasers, and pink Smith & Wesson handguns, all somehow claiming to “raise awareness” of breast cancer.
I thought I’d seen the worst of pinkification – until today’s excerpt from Pornhub.com. I think I need to go have a wee lie-down now to recuperate from that truly nauseating ‘fundraising’ concept.
I was shocked to realize that so little of this “Pinktober” support goes to those whose cancer is metastatic. I think it was on the #hchlitss tweetchat where I learned of the way it is treated.
Our family has been lucky so far. My one aunt who had breast cancer has had no trouble in the 40 years since it occurred
Sadly, very little of the money goes to research…be it on metastatic cancer or breast cancer. Thank you for your comment and I’m very glad that your aunt has been so fortunate.
Excellent post and sorry about your mother. You continue to shed light on this pink movement that seems to have the goal of brand awareness instead of disease awareness. It’s good business for most, but at the expense of many. I have to admit, I’m not at all thrilled about the amount of money that is poured into awareness and products that can be better spent on patients and research. The argument I hear is the sustainability of these campaigns require this type of social marketing but then why don’t they give more time and money to metastatic breast cancer after their pink events are done? They definitely have enough money to do so. I’m hopeful that posts like these will keep the pressure on these organizations to change.
You are so right, it does seem to be about brand awareness. I hope you get to listen to the whole interview with Gayle Sulik, Dr. Susan Love and Lisa Adams.
Thank you, Kathleen, for such an informative, on point post. There are some shockingly insensitive campaigns out there and shameful financial pilfering of well intended donors through “fundraising” where little or no donations go to the purported “cause.”
However, through social media, we have the power to enlighten, educate and even to put an end to certain actions through articles like this one. With just one email this week to the Breast Cancer Research Foundation, I was able to point them to a horrible Youtube campaign “Motorboating for Breast Cancer” where (I won’t call them filmmakers as they don’t have that kind of ethical use of media) some guys with a video camera got women to allow them to rub their faces between the women’s breasts and give the men money in the name of research. BCRF had no idea they were being named in the posted campaign or that they were receiving funds from this source. They immediately returned the funds and instructed them to stop using their name in affiliation. So we CAN influence what is going on.
Up next? I’d like to see what we could all do together to call the NFL on the negligible amount of actual $$ donated versus the amount of funds they are keeping from the “pinking” of professional football. I think appropriate response by them would be to turn around and donate 100% and agree not to use cancer to line their coffers in future. Who’s in?
This is a very thought provoking and sensitive post. I have sometimes wondered how those who aren’t winning the battle must feel watching the pink-fest every October, but I am certainly much more aware now. Thank you for writing this Kathleen and for keeping metastatic cancer in people’s minds.
Thank you Lisa.
Hi, I am so sorry for the loss of your mom.
My sister has breast cancer and she (we) are not wearing pink, nor buying pink. She is not going with the standard treatment of chemo or radiation, but has had a mastectomy with reconstruction. Here is a short video of her journey so far. She is doing great! Here is a short video of her journey through the surgeries and reconstruction. http://youtu.be/iZN1zSgsI9k Every day is breast cancer awareness day for those with cancer and loved ones with cancer.
My thoughts with you and all those dealing with this horrible horrible disease.
Love and light
Annie
Annie, I’m so sorry that you and your sister are going through all of this. You are right “every day is breast cancer awareness day for those who have experienced it.”
So sorry about your mother. My mother thankfully survived breast cancer, no metastasis, but my grandmother did not. There is no predicting. Like my grandmother, my breast cancer has metastasized to my bones. Unlike my grandmother, there are treatments that will keep me alive for a while. But, there is still no cure. And I want to see more weddings and grandchildren. I want the one grandbaby I have to remember me.
So many people think awareness is all that is needed. And their awareness is so shallow or twisted that it is unreal. When I was first diagnosed, some people actually had the nerve to ask if I had skipped mammograms. When my cancer metastasized, the church prayer list called it bone cancer. (Hey, at least they were praying.) When one woman I know posted on FB that a friend of hers had just died of MBC, she included a blurb about “get your yearly exams so it won’t happen to you.” (I expressed sympathy on loss of her friend and decided that was not the time to educate her.) A store clerk taking up donations for Koman told me they have a cure and people no longer die of breast cancer when it is caught early.
I truly wish that the big BC groups would devote some of their awareness to the facts. And research needs to become a priority.
Even if they can’t cure me, if they could at least find a way for this awful disease to be prevented so that yet another generation in my family does not have to suffer from it.
I’m so sorry you have had the experiences you have had…being accused of “skipping mammograms” is the kind of victim blaming that this type of awareness is about. Education, real education about the disease, is needed. Dr. Love points out that she is happy to have the funds…but the money does need to be going to researchers like her.
Coming from a woman that is dying from this disease the site of pornhub.com makes me want to throw up. Does the Susan Komen organization not oversee anything or anyone who uses their name for the sake of donation. It all blows my mind and makes me so angry.
I’m so sorry for the loss of your mother. I too am a HUFFPOST Blogger. As I read the posts from others, part of me is hopeful and part of me is sad. I, last week became a new member of the metastatic cancer club. Please understand that I often use humor to handle…..well….everything. I still see October as pink and I still love it. It’s my month. I don’t think we can change the name to “Breast Cancer Awareness and Metastatic Month” and I don’t think that most of the money raised is used to promote awareness. We are doing a good job of that ourselved. It’s all about the same thing…the cure. Dr. Susan Love wrote a blog at HUFFPOST saying that all cancer is metastatic and I encourage you all to read it. Advances have been made and I hope that I have many years left. Just remember, every dollar given (no matter how large or small) makes a difference and each day I believe we become closer to a cure. I’ll take any money from anyone who want to Pinkwash any day. I’ve seen first hand what stem cells can do for me. I may die from this disease…..but I may not.
Good luck to all of us!
I had not heard the term ‘Pinktober’ but it is apt. I’m appalled at all the corporate & sports pinkafication and know that this is not benefiting women with breast cancer. I am 2.5 years post-diagnosis.
My disappointment with this campaign hit a new high when I walked into a hotel in Mumbai, India and was greeted by a HUGE pink ribbon. I was stunned to think that this was spreading all the way to the other side of the planet.
I want to never give him any hope. We’re just friends. This is what I think, but the fact that even I don’t know how he feels. Time to let nature take its course, is really good.